Ibrance (Palbociclib)
Comments
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Candy.... My tumour marker was 900 on Femara alone, when I took it starting in November, 2016. When Ibrance was added at the end of January, 2017 it had dropped to 700 due to Femara. With the addition of Ibrance, it dropped steadily by about 150 points every cycle until, by June, it was 320. Suddenly at the end of June, it shot up to 520. I was afraid but scans showed no progression. Since then it has bounced around between 450 and 520 every cycle. Scans at the end of October, 2017 and January, 2018 still show no progression. As you can see my TM is much higher than yours as a baseline and the peaks and dips are more dramatic. My MO says we will only worry if it goes higher, keeps going higher and stays higher and even then we will rely on scans. TMs are notorious for being inaccurate so my advice is not to worry unless you see a consistent upward trend. If you're still concerned, speak to your MO and ask for a scan
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Janky...well done!!
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Not so funny story from me today:
When pushing today's Ibrance capsule out of the blister, it suddenly popped loudly and my hands and kitchen counter were covered with bright yellow powder ... the capsule was ripped! I called the German Pfizer hotline, which was not really fun. They had to reconnect me twice and still people could not really help me. They did not know how to clean the spillage, only kept telling me to avoid skin contact and wash my hands, which was rather obvious. But no information as to how to clean the counter. And I was only advised to go to the pharmacy to start the further proceedings, no words on packaging of the ripped capsule or anything.
At the Pharmacy, they also did not really know how to proceed because of the high pricing. Product complaints can take several weeks to get the refund and I need to get a fresh pack of Ibrance by tomorrow (had to hand in the whole pack with all remaining capsules), but the pharmacy does not want to bear the cost of the new pack. So I had to get a new prescription from the hospital to ensure that I will have the medication available tomorrow. However, the pharmacy still could not tell me as to how refunding/pack exchange it to be handled, when I picked up the new pack a few minutes ago.
Did anyone of you also experience a ripped capsule before? Generally, I have the feeling that the plastic part of the blister is rather rigid. About every second time when pushing the capsule out, I have some slight dip in the capsule which eventually will pop back in place when pushing the capsule next to the dip. Oh, it just came to my mind that in the US you usually do not have blisters but boxes. Are there people from other countries with blisters?
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Thank you Leapfrog for the great explaination. As you can see I have only had 3 TM's in 6 months. I don't know if my MO will want to do more frequently----monthly--- or stay with checking them every 2-3 months. Plus if they are so inaccurate why do them. We are going to do scans every 3 months, I think.
This cancer thing sucks !!!! I freak out at every turn. And it doesn't help that I have had difficulty with Ibrance dosing.
I will see the MO next Thurs and will post results then.
Any further discussion on TM's is always welcome. The more information I can learn the better.
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Hello Ladies,
I've been away for a while, not only because of the wonderful holidays in France, but also as I had to swallow my PET-scan results. Although I'm tolerating Ibrance quite well, it seems it doesn't really help. Mets are now growing in my spinal column and skin mets keep growing further away from both breasts. As we are at the end of available approved protocols (failure of 3 different hormonal therapies and 2 different targetted therapies (aromasin/affinitor and now Faslodex/Ibrance), my onc is sending me to a university medical center where they perform research, in the hope I could take part in a trial.
So, I'll leave the Ibrance track, world and companionship. I wish Ibrance will get you all healthy and well for a long, looooong, very long time.
Sending you all sunny hugs from Belgium.
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lissalou, I feel like your questions have not really been answered. I tried a short, curt response last night but I was typing on my phone and I'm not very good at it. Thumb typing is not my thing. Opposing thumbs make us human but not good thumb typists. At least not me. Many women on this thread have reduced their dose due to low neutrophils. That is the only stated legitimate reason given by the drug company. I reduced my dose from 125 mg to 75 mg after 2 months due to severe abdominal pain and diarrhea. My MO was ok with it. But he is used to me doing this. I stopped chemo after 2 cycles when I was supposed to have 6. I stopped Tamoxifen after 4 months when I was supposed to be on it for 5 years. Quality of life is EVERYTHING to me. I don't just give lip service to the quality vs quantity question. People say they value quality over quantity but when push comes to shove, quality always gets sacrificed. Not for me. It is a choice you can make for yourself and should not be made by your family or especially your doctor. They are not the ones suffering. It bothered me that you said, "I am very fatigued and don't feel as though I am really living." When I get to that point, I make a change. There is no data that I can find that shows a difference in efficacy of the different doses. (I have looked for two years to no avail as have others.) Look for the report on the San Antonio conference by Bestbird that says drug researchers use the highest tolerable dose in the drug trials. What is tolerable to them (they have never even taken the drug) is not the same as what is tolerable to you. And yes, I have taken two partial months off and two whole months off for various reasons. My disease is stable after 25 cycles at 75 mg and I have NO side effects. I don't want to be the one to convince you to change because I would feel terrible if you did and then your cancer progressed. I just thought you deserved my honest opinion.
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lissalou, you also asked if reducing the dose made the drug more tolerable. For me, my reduction totally got rid of the GI issues. Other women have reduced doses and gotten some or complete relief from the fatigue. Some have not. I hope some more answer you here. Some have reduced to 100 mg and stayed there. Some went to a further reduction to 75 mg. I do not notice a rash of progressions in these women. One women, Pat, says her doctor starts all of his patients on 100 mg. There is an amazing variety of approaches MOs take with this drug. For some reason, they feel free to experiment.
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lisalou, congratulations on being on this regimen for three years, and wishing you many more. I concur with the other ladies here that have chimed in on the dose reduction to make it more tolerable. I would add one more little nugget from my onc, who said that he has not had a single patient that was able to stay on the 125mg dose, and that new clinical trials are starting now using the 100mg dose to avoid the frequent dose switches and treatment delays that seem to happen with the 125mg dose. I'm aware that some of the ladies on this forum have stayed at 125mg, so it's definitely doable, but it seems like a lot of people don't and still get good results. I had my blood check after a two week break, and all the numbers except neutrophils are back to normal, and the neutrophils have recovered to 1.5. Even so, the MO wants me to do cycle 2 at the 100mg dose, because he feels that the first cycle drop was very dramatic and took a long time to recover, so it isn't likely cycle 2 would go any better. He just feels that 125mg is overkill for me and doesn't think that there's any benefit trying to fight to stay at 125, even though per protocol I could try. I realize that your case is different and you're suffering from excessive fatigue rather than low counts, but I don't think there's something magical about using the neutrophil count as the only side effect that would warrant a dose reduction.
yaelle, so sorry to hear that the hormonals are not working for you anymore. Hope that your medical team finds something tolerable (maybe Xeloda?) that does work and you get a long run of being stable or improving.
janky, well done on making it to a new cycle!
On a very positive note (I'm afraid to even type this so I wouldn't jinx it), the onc said that by palpation only it feels like my breast tumor has shrunk from ~5x4cm to ~4x3cm. He added the usual caveats that it's hard to tell size with lobular, that we don't know what the mets are doing and we'll have to wait for the mid-May scan for a definitive answer, and so on and so forth, but still. It's Friday, and it's a beautiful day here in Boston, so I think I'll go ahead and consider it good news and be very happy about it. Looking forward to starting back on my little capsules of hope tonight.
May the weekend bring something good to each and every one of you.
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NettaGER, can you safely open the blister packs any other way? I get my Ibrance loose, in a bottle, but my husband and I used to own a pharmacy, so I've seen quite a few blister packs - certain drugs only came that way and we had to "unblister" them for our senior patients who couldn't do it themselves - and I was NEVER able to open them successfully. I remember peeling off one layer, then using a small knife to cut the foil (on certain packs), and just using scissors on others. I can't imagine why something as "toxic" as Ibrance should be available in a way that you have to literally push it through the packaging to get at it...
lissalou, my oncologist at Sloan Kettering also starts her patients at 100mg. I've been on it since August 1, never had a problem with my numbers, and have seen amazing effects, so yay for the 100!
candy, of the four different TMs my onc has tested for in the past, none have never gone above 21 - that includes before any treatment and before my tumor was removed, after removal but before Ibrance/Femara, and after seven cycles of the I/F. She stopped checking them because apparently, for me, they indicate nothing.
Happy St. Patrick's Day tomorrow, to all who are Irish or wish they were!!
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They definitely go up and down. Cancer cells dying off can make them rise. Having a cold can make the marker higher. Mine are up and down by about 25% most of the time. And I've been getting great results since September 2016.
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Ciaci: For us here in Germany, it is completely normal to get all medication in blisters. I would feel arkward to get medication except for vitamin supplements in bottles. Until now, I have probably pushed hundreds of capsules and rather thousands of tablets out of blisters. I never had a problem. But as I wrote, the Ibrance plastic part of the blister is quite rigid. I have now decided to cut/pinch the aluminum foil of the blister to allow easier access to avoid any further incident like this morning. Thanks for your suggestion.
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Thank you to everyone who responded. It definitely helps to hear your viewpoints. My ANC hovers near 1 and I have never been told to take time off or delay a cycle. It has just been a very long winter here in Michigan and the depression kicks in. It helps to read all of your positive posts. I was a very active nurse before this particular hell broke loose. I cant imagine how I would go back to that life when I can barely sit upright for the whole day. I have read that some people gain weight on ibrance/femara, I have lost nearly 60 pounds and am now considered anorexic. Has anyone else lost a significant amount of weight? Maybe I am just worrying myself to death, LOL. Does anyone know what the next treatment is after ibrance? Anyway, I hope everyone has a wonderful weekend and I thank you all again for your responses they bring me comfort and hope.
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LissaLou- Thanks for bringing up this question, because I am encouraged that so many oncologists have full confidence in the 100mg dose of Ibrance- I don't have much, if any, fatigue, but definitely low neutropenia counts and maybe will try out th lower dose to see if it affects that.
I have neither gained nor lost any weight on these drugs, and certainly nothing like 60 lbs!!!, no wonder you are exhausted, wow! Is your appetite or sense of taste or smell gone, or to what do you attribute such a large weight loss?
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lissalou, a 60 lb. weight loss seems excessive, and would certainly contribute to your fatigue, which would contribute to your depression. Adding to cure-ious' comments, what does your MO say about that? I think you need a serious sit-down with him/her. As to 2nd line of treatment after I/F, I'm certainly no expert but believe it depends on what kind of progression you have. At one point my MO was concerned about my liver, she said if I had progression there it meant taxol. But next scan was clear so I never followed up on that conversation.
Ciaci, I married a County Down Irishman and we will definitely enjoy a black tomorrow. Slainte!
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unfortunately the sight and smell of food is repulsive to me. I am a type 1 diabetic so this is a difficult problem for me. I try to eat snack sized meals throughout the day and an ensure before bed. Sweets are the only thing that occasionally appeals to me. I believe most of my weight loss is due to worry. I have Xanax but spending your days in that zone is not really living either. It is odd that as a teenager I often said I didn't care how I died as long as I didn't know it was coming. Jokes on me I guess, lol. I did therapy and all they could say was "forget about what you planned or pictured for your future just enjoy the present." Easier said than done. Thank you for listening.
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Candy...further to that,many MOs don't do TMs for that very reason. Mine only does them because it's required by the trial protocol. I used to ask for the result at each consult but now I don't ask. If he thinks there's a reason I should know, he will tell me. I honestly wouldn't be too concerned about your TMs. A lot of us here have given up worrying about them and I was told by my trial nurse that most of the ladies on my trial have as well. I agree with jensgotthis.....even a slightly sore throat can throw out your results.
The best thing to do to stop yourself from freaking out is to not think about the future. Concentrate on living one day at a time. Since I've been doing this, I no longer worry. Worrying is futile, changes nothing and only causes unhappiness. If you're worrying it means you're living in a future that may not happen; all of those worries are your imagination doing overtime.
Re weight loss or gain, mine is stable. I lost 7kg (I think that's about 18lbs) at the time of my mastectomy but I've slowly gained it back, which is good because I'm very slim and it's remained at 52kg, my normal weight, since. I do have some nausea and indigestion and loss of appetite and I don't eat quite as much as I used to but I'm not a big eater at the best of times. I'm on 100mgm now.
Yaelle......I sincerely hope you are able to participate on a trial. Please pop in and let us know how you're going from time to time. Sending you my love and a big hug.
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Cure-ious, I was really surprised to see that you are considering talking to you MO about lowering your dose. You've always been so adamant about staying on 125 mg. What changed your mind? I have a few people here in town I'd like to move in that direction. They are so fatigued but, like you said, "chicken."
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Hi Ibrance friends - I just finished my 1st 21 day course and yestersay i noticed a bit of a rash on my chest/shoulder where my bra strap hits. I have pretty sensitive skin so am hoping it’s just some sort of contact dermatitis, because I tend to get that, but maybe it is from the Ibrance... or the Faslodex? It is not particularly itchy
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LaurenH - I had a rash during my week off cycle, and it too was after my first 21 day cycle (Just started 2nd cycle yesterday). It did not bother me so I left it alone, just continued to rub the Glaxal cream on it a couple of times daily. I showed it to my MO and he was not at all concerned...
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janky - thank you! I always feel so much better when someone has the same side effect! Bless you!
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Lauren: I had rashes in my first cycles as well. They resolved on their own without anything specific other than some extra, good quality lotion. I found that the SE's from Ibrance varied from cycle to cycle in the beginning. Sometimes I had rashes, sometimes I had mouth sores, sometimes I had excessive hair loss, sometimes nausea.... I could go on and on. I've had all of the SE's at one time or another, but none of them stayed too long.
I would like to weigh in on the fatigue discussion. I was having severe fatigue back in January. I was starting to plan an early retirement. (I'm 48 years old.) I was having trouble concentrating at work. I was constantly exhausted. Mornings were fine, but by 2:00 in the afternoon, I was really struggling with basic activities. My memory was really going and I was having trouble performing my job. I was ready to throw in the towel. Around this time I sought a 2nd opinion. Fatigue was my primary concern for the new MO and I requested a reduction of the 125mg dosage. When I asked, she gave me a sideways glance and said, "Nah. I think you're just tired." True enough, I haven't slept well in months. I wake multiple times every night with hot flashes. I wake up nearly every hour. I'm lucky to get 4 hours of good sleep. So, we addressed the sleep issue and, surprise surprise - I feel much better. I wouldn't say that I feel like I did before cancer, but I feel well enough to carry on without changes in my hectic schedule. No naps, and no retirement.
Please understand, I'm NOT suggesting that everyone's problem is sleep depravation, but it is something to consider. For those who are wrestling with reducing their dose AND they are having sleep issues, see if you can resolve the sleep before you jump into the reduced dose.
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Midwest_Laura - So how do you deal with the sleep deprivation? I take a 5mg Zoplicone every night around 11 pm, which helps me sleep 3 - 5 hours, then I drift on and off till I get up between 7 & 8 a.m. Anything else I can try? thank you. J
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janky, I take .5 mg of Ativan at bedtime. Yes, that's .5, half of one mg. It gets me to sleep and lets me go back to sleep all three, four, even five times I wake up to pee. That's a whole other story. My PCP prescribed 1 mg and my therapist took it down to .5. Still works.
Very good suggestion, Laura.
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Midwest Laura - thanks for the rash confirmation and the list of other stuff you experienced so I can look out for it. Drug company side effect list are so non-specific that you never know what people REALLY experience until you chat with patients.
Sleep is an interesting topic for me. I have sleep issues normally - I lack melatonin. (Taking it doesn’t help because I have almost none so it’s like a drop in a bucket)s. So my body has no natural clock. Ambian helps but normally it still takes about 2-3 hours for me to fall asleep and I have tons of energy right around 10 pm. Because of my job, most days I need to be up before 7 so I normally get 3-4 hours a night and then crash on fridays and sleep for 10-12 hours. I sleep really soundly and I require about 10 alarms to wake up. Sometimes I even sleep through that. (I have a million crazy stories about how deeply I sleep.)
Now that’s I am a bit fatigued from Ibrance and radiation to my rib (15 of 16 cycles), I start to get tired at a normal hour (like 10:30) and this week I have been asleep by midnight and waking up naturally at about 6:30 every day! This is actually amazing! i feel like a normal human and I’m actually really excited about this aspect of things.
So i feel really badly that some of you are struggling with the fatigue and sleeping issues, but I have to say, this is a major bright spot for me.
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One story so you have an idea of how much of a big deal this is and it’s actually kinda funny. I was in Istanbul, Turkey for work a couple of years ago. I set my 10 alarms and they all started going off and hotel security heard them and had the front desk call my room. No answer after 10 rings so hotel was convinced i was dead. They sent security to enter my room but I had the door dead bolted. So they disassembled the door and took it completely off and 4 security guards with machines guns strapped to their chest stood over my sleeping body - alarms going off all over the room. I finally woke up. It was quite a scene and I was very glad I had Pajammas on. :-
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LaurenH, thank you for the amazingly funny story! You started my day off with a good dose of laughter.
I have trouble getting to sleep, usually wake up to pee about 3 times, then finally wake up about 8:30 ( if I can sleep through my DD and DGD early morning getting-ready-for-work very noisy routine.) I take a Benedryl to help me sleep if I am not tired enough when I go to bed. If I break one in half, I get up earlier without being drowsy, but don't sleep as long. My DH says 1/2 is only a placebo, but it works for me so I don't care.
Chris
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Placebos that work are the best. No side effects.
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Benadryl puts me out when I get it with herceptin (I get hives from herceptin) but I have tried it at night and I usually still see 3am before I fall asleep.
Awesome that a half-dose works for you, intolight. i don’t like taking Ambian every night but it’s the only thing that kinda works.
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Hi all! (and hi again, Janet!)
Just starting my 2nd round of Ibrance today (125mg). Also getting Faslodex and Xgeva injections. No real side effects to complain of so far. Just wanted to tell you, LaurenH, your story made me laugh out loud! I could just imagine waking up to all those strange guys with guns in your room!! I am such a light sleeper and any noise or light will wake me up. I would love to have one good solid night of sleep, but I also wake up to pee several times a night and toss and turn through most of the rest of it. Start getting some good sleep just about the time my alarm goes off!
Thanks to all of you for your input. This is where I come when I have questions and I'm always reassured after.
Janet
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Don't get confused. There are now two Janets from NM. I found JanetNM on another thread and we started PMing over a year ago. Welcome to this thread, Janet. It's a very good one. Lots of cool folks.
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